top of page

Somebody rare

Nine year old Lacey, turned a school poetry assignment into a beautiful dedication to her sister Mila-Belle, and to raise awareness for the rare disease Beckwith-Wiedemann Syndrome

Nine year old Lacey is such a credit to her family and the eldest of three children. Both of her siblings have special needs. Her sister Mila-belle was born with a minor umbilical hernia (where some parts of the tummy can push into the baby's umbilical cord) which was repaired on day two of her life when she was a newborn baby. During pregnancy it was suspected that Mila-Belle had Beckwith-Wiedemann Syndrome which was then diagnosed shortly after birth.

"Lacey is a great big sister to both Ronnie and Mila-Belle and likes to help out with all of their medical needs. Lacey decided to write this poem after she was set some work from school to complete. She chose to write about Mila-Belle to raise more awareness that not all disabilities are visible and sometimes a disability is what makes the person who they are." Lacey's Mum

Poem by Lacey, dedicated to Mila-Bella

What is Beckwith-Wiedemann Syndrome (BWS)?

BWS is a congenital condition affecting growth, which means a child will have the condition at birth. It is known as an overgrowth syndrome and may involve several parts of the body.

If you would like to submit your voice to the RARE Youth Revolution, please email our youth editor, Daisy Marriott:


bottom of page